ALD Community Calendar

Community Call: Cerebral ALD

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Thursday, February 22nd at 5 PM EST for pre-, post-, and non-transplanted families. Please reach out to [email protected] if you have any questions. You can register for the call using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ek8ynrg3bee771c8   **Please do not register for this…

Details

Date:
February 22
Time:
5:00 pm - 6:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ek8ynrg3bee771c8

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

Community Call: Connecting Communities

Please join us for a new Community Call co-hosted by ALD Connect (US-based) and Alex TLC (UK-based) on Sunday, February 25th at 10am EST (UTC-5 Time)/ 3pm GMT. Everyone in the ALD community is welcome to join, and we will breakout by phenotype. Reach out to [email protected] if you have any questions. You can register…

Details

Date:
February 25
Time:
10:00 am - 11:00 am
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ek8ynrhee3ed74db

Organizers

ALD Connect
Alex TLC

Community Call: Symptomatic Women

Please join us for a community call on Monday, February 26th at 7 PM EST for symptomatic women with ALD facilitated by Janis Sherwood and Kathleen O'Sullivan-Fortin. This call will feature a special guest speaker, Dr. Amena Smith Fine, who will speak about research for women with ALD. Reach out to [email protected] if you have…

Details

Date:
February 26
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ek8ynrgq88804c7b

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

llamada comunitaria en español

¡Únase a nosotros para una llamada comunitaria ALD en español! Esta convocatoria es un proyecto conjunto entre la Fundación Lautaro te Necesita y ALD Connect y será facilitada por Verónica de Pablo y Jean Cappello. La convocatoria se realizará el 27 de febrero a las 4pm EST (hora UTC-5) / 18 hs de Argentina. Regístrese…

Details

Date:
February 27
Time:
4:00 pm - 5:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ek8ynrieabab8f22

Organizers

Fundación Lautaro te Necesita
ALD Connect

Community Call: AMN Men

Please join us for a community call facilitated by Ken Dieffenbach and Tim Mathwig on Tuesday, February 27th at 7 PM EST for AMN men. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ek8ynrj516fecbee   **Please do not register for this call unless you are a patient…

Details

Date:
February 27
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ek8ynrj516fecbee

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

Community Call: Newborn Screening, Young Families, Parents of Asymptomatic Children

Please join us for a community call facilitated by Suzanne Flynn, Tara Meady, and Kathleen O’Sullivan-Fortin on Wednesday, February 28th at 7:30 PM EST for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. You can register for the call using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ek8ynrjqd3a08b10   **Please…

Details

Date:
February 28
Time:
7:30 pm - 8:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ek8ynrjqd3a08b10

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

United Leukodystrophy Foundation Webinar: Caregiver Burnout Panel

Join the United Leukodystrophy Foundation for an educational and discussion webinar focused on recognizing Caregiver Burnout and ways to take care of yourself - as you continue to take care of your loved one with leukodystrophy. Panelists: Marla Chapleau, mother to Aiden affected by MLC David Flores, father to Joshua affected by 4H Margaret Halter,…

Organizer

United Leukodystrophy Foundation
View Organizer Website

Adult Cerebral ALD Webinar

Join us for a webinar titled "Adult Cerebral ALD". This webinar will feature Dr. Ali Fatemi and Dr. Troy Lund. It will be moderated by ALD Connect Board Member and AMN patient, Ben Lenail. The webinar will take place on Wednesday, March 6th at 7pm EST (UTC-5 Time). You can register for the webinar using…

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

ALD Alliance: ALD Standards of Care Conference and ALD Family Gathering

Save the dates for ALD Alliance's annual standards of care meeting and ALD family breakfast and gathering: NEWBORN SCREENING ROUNDTABLE (NBS PROGRAMS ONLY): MARCH 20, 2024 STANDARDS OF CARE CONFERENCE: MARCH 21 & 22, 2024 ALD FAMILY BREAKFAST & GATHERING: MARCH 23, 2024 More information, including registration information, can be found on the ALD Alliance…

Details

Start:
March 21 @ 8:00 am
End:
March 23 @ 5:00 pm
Website:
https://www.aldalliance.org/ald-meetings--recordings.html

Organizer

ALD Alliance
View Organizer Website

If you would like to add an event to the ALD Community Calendar, please email your event details [email protected]. Please include the name of the event, description, and contact information. Thank you!

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